For me, part of what it means to be “Fairly Southern” is to be fair to and inclusive of people of all races, genders, abilities, ages, sexual orientations, and cultures. One of my original intentions for this blog was for it to be a space that promotes diversity and inclusion in the South. Social justice is an undercurrent in many of my posts about ethical fashion and sustainability, but I also hope to publish more posts that directly focus on promoting a more inclusive Southern culture. I am excited to do just that today with a spotlight on Hannah Setzer, a Virginia native with a rare medical condition who is on a mission to make the world, and especially the fitness industry, more inclusive for those with disabilities and medical needs!
I did a Q&A with Hannah to learn more about her background and her mission. I can’t wait for you all to get to know this spunky lady! Without further ado: meet Hannah!
Hannah, tell us a little about yourself!
I am a Disability Rights Advocate and also have an Instagram account called Feeding Tube Fitness. I live in Virginia with my husband Brandon and our four pets: two dogs, one cat, and one hedgehog.
I was born with a very rare, serious medical condition called Cystic Hygroma of the head and neck that affects the lymphatic system. I had many surgeries right after I was born to remove cysts from my head and neck. In the process, the doctors removed several of my facial nerves, so I can’t close my eyes or mouth.
I got my tracheostomy tube and my feeding tube just days after I was born, so I’ve had them literally forever! There are literally thousands of cysts in my head and neck, including my airway and my esophagus, so I breathe through the trach and eat through my feeding tube.
My health is currently totally stable, managed by exercise and diet. I have no issues cognitively or developmentally. I am very social!
What are some of the biggest challenges you’ve faced with your medical condition?
One of the biggest challenges has always been the unknown. Growing up, and probably even now, there are not many children with my condition to the severity I experience it. Oftentimes those born with Cystic Hygroma have their condition manifest on the outside of their body, so they may have a pocket or two of cysts on the outside of their head or neck. Mine is all internal, through all layers of tissues, muscles, fat, nerves, etc. This makes it much more difficult to try to extract as many cysts as possible. For lack of a better term, I often felt like a science experiment with my team of doctors. They would try new medicines on me, try different types of surgeries, and try various procedures all to help get rid of the cysts and make my face look as “normal” as possible.
I am incredibly grateful for the team of doctors that kept me alive and fought for me up until my early 20’s. After graduating college, I told my parents and my team of doctors I was done having surgeries. By that point I had had upwards of 60 surgeries, and there was no eminent threat to my livelihood anymore. Despite not having major surgeries for many years now, I still face challenges every day. My feeding tube has a mind of its own, and I’m constantly trying to live my best life around that little tube.
Tell me about Feeding Tube Fitness.
In January 2018, I decided to move my body for 365 days. I was pretty invested by July/August and people started telling me to start a fitness account on Instagram. I thought that was insane because I am for SURE not a fitness expert, not doing anything extraordinary or special, and mostly I’m just a goof! I started one though and thought it would go NOWHERE. You can go on Instagram or Pinterest and find literally millions of fitness plans, routines, exercises, and a plethora of skinny white girls in sports bras doing ab workouts. I didn’t want to add to the oversaturated and noisy market. I started poking around, and in this sea of videos and photos I didn’t see ANY people with disabilities or medical conditions represented. Thus, a dream and an Instagram account was born! I wanted to show the world that people with disabilities and medical conditions could work out, move their bodies and be in this fitness industry that pretty much only promotes straight, white, “in shape” people. I’m here to break the mold. I want people with disabilities on the covers of fitness magazines, modeling sports bras and leggings on fitness websites, and repping the trendiest work out programs and equipment. People with disabilities are left out of so many aspects of everyday life, and the fitness industry is certainly not doing anything to change that. Hopefully I can do whatever I can to help change the world.
Tell me about your current job. What do you do as Disability Rights Advocate?
I work for Virginia’s Protection and Advocacy agency for people with disabilities. Every state has a Protection and Advocacy agency like ours. We have advocates and attorneys on staff helping to protect and advocate for and educate the state about people with disabilities. Our agency is the only in the country to receive all serious injury and incident reports from all state licensed facilities (mental health institutions, group homes, adult day programs), and our team reviews every single one of these reports. We can choose to follow up on egregious ones to ensure the person is okay, ensure policies and procedures are changed, and ensure that future clients of these services are not harmed.
I also do a lot of accessibility work. You can often find me in random parking lots measuring accessible parking spaces and curb cuts to ensure they meet ADA standards. I do a lot of accessibility work at doctors offices, hospitals, gyms, movie theaters, social security offices–you name it, and I’m there counting and measuring parking spaces. It is crucial that people with disabilities have access to get to places they need and want to go.
Do you think your own experience with Cystic Hygroma has helped you be a better advocate for others?
I think having a severe medical condition myself has definitely helped me be a better advocate in my career and in my life. We often get parents calling our agency about their child who has been denied services or accommodations, and my heart goes out to them. They are usually exhausted, desperate, and so discouraged. I will share my story with them about having a feeding tube and a trach to breathe through and how endlessly my parents had to fight to get me the services I needed growing up. If our agency can help them, we certainly do everything we can, but if not I do try to offer hope, encouragement, and support.
And finally, you know we have to talk about the South here on Fairly Southern! What are your favorite and least favorite parts of living in the South?
I love the South. I love saying ya’ll. I love the heat. I love that people are kind. I don’t love that people can be stuck in their ways and not necessarily progressive. I am entirely too honest in life, and I don’t like people who are only kind for Southern-sake and are not genuine about it.
Hannah, I love that YOU are so genuine and that you are encouraging others here in the South not to be stuck in their ways but rather to embrace differences! The fitness industry is so much better off to have you in it.
I encourage everyone to go follow Hannah on Instagram: @feedingtube.fitness.
Click here to read other Southerner Spotlight posts!